The Development of an Educational Programme for Primary Biliary Cirrhosis (PBC) Patients with Fatigue
Primary biliary cirrhosis (PBC) is long-term auto-immune liver disease affecting about 20,000 people in the UK. The immune system that usually protects the body from infections, attacks its own cells. In PBC it is the bile ducts are attacked and damaged by the immune system and so bile gets clogged in the liver and causes damage.
There is no cure for PBC. A drug called ursodeoxycholic acid can slow down the disease but it does not help with symptoms. From our research we know that the worst symptom of PBC is fatigue (severe exhaustion) and about 45% of patients suffer from it. Fatigue often means patients have to cut back on activities and they have a poor quality of life.
Although Newcastle is leading in developing drugs and laboratory research into PBC, we don’t know much about living with the disease. As a nurse, I wanted to develop a fatigue educational programme (FEP) for PBC patients in the absence of any drug therapies or interventions for fatigue because it has been shown that patients who have a deeper understanding of their symptoms may cope and feel better.
A FNF Travel Scholarship has enabled collaboration with experts like Professor Nijs in Belgium to develop the FEP. The work that Professor Nijs has done in relation to fatigue is related to fatigue physiology (what is happening in the body) and exercise in chronic fatigue syndrome; many of his colleagues are looking at fatigue in other disease areas.
It was apparent to me that collaboration with this centre was vital. As well as his work on fatigue, Professor Nijs has developed a similar education programme for patients with back pain and I was able to observe this first hand on my trips to Vrije University Hospital. I took away the importance of patient understanding of their symptom and how to achieve this and incorporated what I had learned in developing the FEP for fatigue.
I gathered evidence from the latest medical journals and selected key themes around which to structure the FEP. New resources were designed such as a slide show and booklet to support delivery of the programme.
The programme is being implemented in the nurse-led service symptom management service within the specialist PBC clinic in Newcastle upon Tyne. Patients who have fatigue and PBC will be referred by a doctor for consideration of the FEP. The FEP will consist of 3 one-to-one sessions (30 minute, 1 hour and a telephone follow-up). A group approach may also be considered in the future.
It is recommended that the FEP be evaluated after a year using interviews and questionnaires. As well as benefitting the patients in the clinic, it is anticipated that there may be scope to develop a podcast and provide online materials to national and international PBC patients via the UK-PBC website. There is also the opportunity to recommend the resources in national guidelines. It is also suggested the approach could be used to address other PBC symptoms or the FEP be adapted for use in other diseases.